Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 In a message dated 11/1/99 3:11:50 PM Eastern Standard Time, mgrahn@... writes: << since by Cheneys phase theory that might put her in the phase that the RnaseL is long longer the issue........... >> I don't think this interpretation of Cheney's phase theory is what he meant. The years do apply but only along with the patient only being so severe that there are no longer any fluctuations. These phase 3 patients are unable to do much but eat and sleep and the eating is even a chore. They level off with barely an existence. I've had CFIDS for over 40 years and am certainly not in the phase 3 category. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Marcia, I have a different video where he was presenting to a support group, but he does put it much more plainly in your quotation. Thank you for offering it. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Hi Bob, I for one would be very anxious to learn what you find out about your wifes condition from Dr. and what if anything he can do to help her. I would be curious to know if a person ill for 23 years would be a good candidate for Ampligen, since by Cheneys phase theory that might put her in the phase that the RnaseL is long longer the issue........... I have been ill for 21 years and have no CFS specialist here, have to do the best with what my HMO is willing to do (lets don't go there!, very frustrating situation!) and many horror stories from the past trying to get help before CFS was invented. What a nightmare, I'm sure you've been there.....spent many years without any medical help at all cause I just couldn't deal with it. So I'd like to learn whatever I can from your experiences there with Dr. , please share with us on the list! I really have heard wonderful things about Dr. as a person and a physician so hope your experience goes well! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 In a message dated 11/2/99 12:35:42 AM Eastern Standard Time, taxdoc@... writes: << Does someone have 's telephone number? >> His number is 702-832-0989 and FAX is 702-832-3046. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 GAILRONDA@... wrote: > From: GAILRONDA@... > > In a message dated 11/1/99 3:11:50 PM Eastern Standard Time, > mgrahn@... writes: > > << since by Cheneys phase theory that might put her in the phase that the > RnaseL is long longer the issue........... > >> > I don't think this interpretation of Cheney's phase theory is what he meant. > The years do apply but only along with the patient only being so severe that > there are no longer any fluctuations. These phase 3 patients are unable to > do much but eat and sleep and the eating is even a chore. They level off > with barely an existence. I've had CFIDS for over 40 years and am certainly > not in the phase 3 category. Gail Here are Cheneys EXACT words, what you just said is NOT AT ALL what he said!!! You have totally miscontrued this!!!!!!! > And secondly, we began to see larger and larger numbers of phase 3 illness. > Phase 3 illness. This is what they sound like: " Dr. Cheney, I've had this > disease for about 10 years and, if it weren't for the fact that I can't do > anything, I would think I had recovered. " They essentially say, " Within my > boundaries I have very little suffering anymore. I don't suffer any more. I > have no significant symptoms any more. It's only when I exceed these > boundaries that the symptoms come back and I get sick again. " So my problem > now is not a person who suffers but a person who cannot do anything--or do > anything like I used to. I'm seeing more and more and more people like > this. And I think that 10 years ago I didn't see anyone like this, that I > recall. Or maybe they didn't show up because they didn't think they were > sick anymore. That's phase 3. > Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Re: Bob/Dr > From: Marcia Grahn <mgrahn@...> > > Hi Bob, > > I for one would be very anxious to learn what you find out about your wifes condition from Dr. and what if anything he can do to help her. I would be curious to know if a person ill for > 23 years would be a good candidate for Ampligen, since by Cheneys phase theory that might put her in the phase that the RnaseL is long longer the issue........... From the CFS Electronic Nesletter, 10/28 (all-caps emphasis mine): *** Suhadolnik from Philadelphia continued to confirm his work that the RnaseL pathway is upregulated in CFS and has continued to demonstrate the presence of a low molecular weight (LMW) form of this enzyme in peripheral blood mononuclear cells (PBMC) in CFS. 2 independent experimental methods were used to demonstrate the presence of this enzyme. Both methods demonstrated significantly statistical agreement with clinical diagnosis and showed a high degree of specificity and sensitivity. The levels of the LMW RnaseL correlated with Karnofsky scores. The presence of the LMW was INDEPENDENT OF THE DURATION OF THE CFS, and the CFS patients could be identified accurately. The drug Ampligen has been found to normalise the pattern. *** I understand Dr. to be looking for the LMW enzyme and that this is a reliable measure regarless of how long you have been ill. > I have been ill for 21 years and have no CFS specialist here, have to do the best with what my HMO is willing to do (lets don't go there!, very frustrating situation!) and many horror stories from > the past trying to get help before CFS was invented. What a nightmare, I'm sure you've been there.....spent many years without any medical help at all cause I just couldn't deal with it. My wife and I have let it drift for a few years, as the only promising drug we've seen is Ampligen and that doesn't seem to be going anywhere, for a variety of dopey reasons; it was easier to not look at it, if you know what I mean. It hurts to think that could likely have been much improved several years ago, were it not for the absurdist FDA bureaucracy, the prejudices and uncaring of the medical community, and the constant lack of unity and infighting in the CFIDS community. However, 's cognitive problems (always her biggest problem) have worsened noticeably of late. Also we moved from MI to AZ in '96 which means 's practice is no longer a continent-hop away. So we finally decided to get on his waiting list. > So I'd like to learn whatever I can from your experiences there with Dr. , please share with us on the list! We obtained a referral to Dr out of our local physician early this summer. 's office warned us of a 1+ year waiting list but we were fortunate to be summoned early last month, only about a 4 month wait. I have already detailed elsewhere here the general costs involved in an initial consultation. In 's case this included drawing in excess of 30 vials of blood, most of it at a nearby lab with the exception of the samples for testing for the LMW enzyme at REDD Labs. This latter is specially processed for shipment to Belgium in the Dr.'s office. In the afternoon, extensive EKG / breathing tests, resting and on treadmill, are done, followed by cognitive testing. SPECT and MRI brain scans were scheduled back-to-back in Reno the next day. The lab results we have back so far indicate that has an active HHV6 infection, and that her Natural Killer Cell Function score is 18% (normal is at least 80%). The SPECT results show cerebral edema, vasculitis and some small infarctions typical of CFIDS. In a strange way, this is all rather comforting and validating as its really the first hard evidence of physical damage / problems that she has obtained in her 23 years with the disease. We wish we had done this awhile ago. We no sooner returned home from 's office than an SSDI disability review showed up in the mailbox. So another benefit is that we will have massive and incredibly current documentation for 's disability. Next up is a follow-up visit in early December to get Dr. s' evaluation of all the test results and recommendations. Also, probably he will do lumbar puncture although we are not 100% sure what the benefits of that would be (we certainly are aware of the risks!) and are not sure we are going to agree to it. We'll extract a rationale from the Dr or his staff before we sign off on that one. -- Bob Grommes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Does someone have 's telephone number? Thanks, At 08:51 PM 11/1/99 -0900, you wrote: >From: Marcia Grahn <mgrahn@...> > > > >Bob Grommes wrote: > > > > We obtained a referral to Dr out of our local physician early this > > summer. 's office warned us of a 1+ year waiting list but we were > > fortunate to be summoned early last month, only about a 4 month wait. > > > > I have already detailed elsewhere here the general costs involved in an > > initial consultation. In 's case this included drawing in excess > of 30 > > vials of blood, most of it at a nearby lab with the exception of the > samples > > for testing for the LMW enzyme at REDD Labs. This latter is specially > > processed for shipment to Belgium in the Dr.'s office. In the afternoon, > > extensive EKG / breathing tests, resting and on treadmill, are done, > > followed by cognitive testing. SPECT and MRI brain scans were scheduled > > back-to-back in Reno the next day. > > > > The lab results we have back so far indicate that has an active HHV6 > > infection, and that her Natural Killer Cell Function score is 18% > (normal is > > at least 80%). The SPECT results show cerebral edema, vasculitis and some > > small infarctions typical of CFIDS. > > > > In a strange way, this is all rather comforting and validating as its > really > > the first hard evidence of physical damage / problems that she has obtained > > in her 23 years with the disease. We wish we had done this awhile ago. > >Bob and , > >Thanks so much for sharing all this info. Sounds like this is the route I >need to go. Have been piddling around with docs all these years who don't >know CFS and you found out more in this first >intense initial visit than I have learned about my condition in 21 years!!!! > >I have the same fears, that they will find the damage done by so many >years of illness, but now at least you know what you are dealing with. It >will make it easier to go from there and make >treatment decisions. Sounds like the RnaseL defect then is a factor no >matter how long one has had CFS?, I did not know that. > >I hope you will keep us posted on test results and your treatment choices >and results! > >Thanks for the info! > >Marcia > >>This list is intended for patients to share personal experiences with each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Re: Bob/Dr > Thanks so much for sharing all this info. Sounds like this is the route I need to go. Have been piddling around with docs all these years who don't know CFS and you found out more in this first > intense initial visit than I have learned about my condition in 21 years!!!! Deplorable, isn't it? Our family physician is just punching the clock and doing as little as possible. He knows has CFIDS, he knows what that is, he has several CFIDS patients. But if she doesn't bring it up he doesn't make any effort to monitor or treat it. He is the sort of fellow who would never find a cancer on his own. He will be shown the door eventually but we don't want to rock the boat right now, with the SSDI review and all. > I have the same fears, that they will find the damage done by so many years of illness, but now at least you know what you are dealing with. It will make it easier to go from there and make > treatment decisions. It is better to know the truth, whatever it may be. And it's good for your confidence and self-respect to have some hard evidence. Actually 's greatest fear was that they wouldn't find much! Then she would have had to wonder about her own sanity. > Sounds like the RnaseL defect then is a factor no matter how long one has had CFS?, I did not know that. Dr agrees with Suhadolnik and we are inclined to trust him as he and Suhadolnik are in a better position to know than anyone else. > I hope you will keep us posted on test results and your treatment choices and results! > > Thanks for the info! > Will do, and you're welcome! --Bob Grommes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Bob Grommes wrote: > We obtained a referral to Dr out of our local physician early this > summer. 's office warned us of a 1+ year waiting list but we were > fortunate to be summoned early last month, only about a 4 month wait. > > I have already detailed elsewhere here the general costs involved in an > initial consultation. In 's case this included drawing in excess of 30 > vials of blood, most of it at a nearby lab with the exception of the samples > for testing for the LMW enzyme at REDD Labs. This latter is specially > processed for shipment to Belgium in the Dr.'s office. In the afternoon, > extensive EKG / breathing tests, resting and on treadmill, are done, > followed by cognitive testing. SPECT and MRI brain scans were scheduled > back-to-back in Reno the next day. > > The lab results we have back so far indicate that has an active HHV6 > infection, and that her Natural Killer Cell Function score is 18% (normal is > at least 80%). The SPECT results show cerebral edema, vasculitis and some > small infarctions typical of CFIDS. > > In a strange way, this is all rather comforting and validating as its really > the first hard evidence of physical damage / problems that she has obtained > in her 23 years with the disease. We wish we had done this awhile ago. Bob and , Thanks so much for sharing all this info. Sounds like this is the route I need to go. Have been piddling around with docs all these years who don't know CFS and you found out more in this first intense initial visit than I have learned about my condition in 21 years!!!! I have the same fears, that they will find the damage done by so many years of illness, but now at least you know what you are dealing with. It will make it easier to go from there and make treatment decisions. Sounds like the RnaseL defect then is a factor no matter how long one has had CFS?, I did not know that. I hope you will keep us posted on test results and your treatment choices and results! Thanks for the info! Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 's area code has changed to 775. Voice: 775-832-0989 Fax: 775-832-3046 --Bob Grommes Re: Bob/Dr > From: GAILRONDA@... > > In a message dated 11/2/99 12:35:42 AM Eastern Standard Time, taxdoc@... > writes: > > << Does someone have 's telephone number? > >> > His number is 702-832-0989 and FAX is 702-832-3046. > Gail > > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Thanks Gail. At 12:53 AM 11/2/99 -0500, you wrote: >From: GAILRONDA@... > >In a message dated 11/2/99 12:35:42 AM Eastern Standard Time, taxdoc@... >writes: > ><< Does someone have 's telephone number? > >> >His number is 702-832-0989 and FAX is 702-832-3046. >Gail > >>This list is intended for patients to share personal experiences with each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 1999 Report Share Posted November 2, 1999 Bob, Thanks, At 07:32 AM 11/2/99 -0700, you wrote: >From: " Bob Grommes " <bgrommes@...> > >'s area code has changed to 775. > >Voice: 775-832-0989 >Fax: 775-832-3046 > >--Bob Grommes > > Re: Bob/Dr > > > > From: GAILRONDA@... > > > > In a message dated 11/2/99 12:35:42 AM Eastern Standard Time, >taxdoc@... > > writes: > > > > << Does someone have 's telephone number? > > >> > > His number is 702-832-0989 and FAX is 702-832-3046. > > Gail > > > > > This list is intended for patients to share personal experiences with > each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. > >>This list is intended for patients to share personal experiences with each >other, not to give medical advice. If you are interested in any treatment >discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
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